100 Blogs

Well look at that! We have reached a milestone, 100 blog posts!

I am not much of a writer, but  I thought that I could manage sharing a few stories about my cancer journey. Here we are twenty-one months and 100 blogs later,  I am still here,  and still writing weekly blogs with the help of My Michelle.  I have to admit that there were times when I thought, why am continuing to write this blog? People have their own personal issues and concerns. They will lose interest and who really wants to hear about my personal struggles and successes with cancer anyway? 

Over time, I have come to realize though the thoughtful messages, comments and notes, that we are all dealing with cancer in some way or another, either personally or with a loved one, or a close friend or colleague. Cancer really does touch us all. My weekly blog writing, has for me become a source of purpose, of hope and a wonderful way to chronicle this crazy journey we are on while keeping my extended family, friends and colleagues updated on my weekly progress (or lack of progress). 

Others have told me that it inspires them, reminds them of their own cancer journey or that of someone they know or cared for. This makes me proud and thankful that I decided to share. I have learned that I am not in this journey alone. Besides my family, I have a 'army of support' around me.  

I wanted to share with you the titles of my 100 blog posts, not to brag or be boastful but to celebrate that I am still here, fighting this disease and because they truly represents my journey thus far. You can see from the titles that there have been many twists and turns and many ups and downs along the way. Who knows where this journey will take us next or how long it will continue. This is my life, as we know it now. Like any good drama or thriller, we are not at the climax of the story yet! This is my cancer journey, thanks for coming along for the ride with me. 

My Personal Cancer Journey Blog- By Richard & Michelle Erdmann

1. Unwelcomed News

2. Over the Next 20 Days

3. Needles, Tests and Scans Oh My!

4. Food, Glorious Food!

5. Hurry up and Wait!

6. My Radiation 101

7. You are Not Alone

8. My Chemo 101

9. Thoughts and Prayers

10. In those Moments

11. Blessing or Burden?

12. Stuck in Neutral

13. Cancer touches so many of us!

14. Side Effects: Short Term Pain for Long Term Gain?

15. Sometimes.... Laughter is the best medicine!

16. My Michelle 

17. Ups and Downs

18. Supporting Cancer Research

19. Family- Home Sweet Home

20. Darcy- My Faithful Companion

21. New Year, New Decade

22. Kitchen Dancing

23. Side Effects: The 5 Senses

24. My "Bottle Buddy"

25. Beating the Average

26. World Cancer Day- February 4th

27. Spring Cleaning- Got Junk?

28. Words to Live By

29. Family is Everything!

30. Why am I still taking out the garbage?

31. Trying to find joy, everyday!

32. SCAN-xiety!

33. Uncertain Times

34. Everyday Heroes!

35. The Power of Walking

36. Home Movies: Treasuring the Moments

37. Just keep swimming, swimming, swimming!

38. Today's Forecast: 100% Change of Waiting!

39. This morning, with you, having coffee

40. Honouring Mothers

41. Unsinkable #unsinkable

42. Is this our new Normal?

43. Anticipating a perfect summer day!

44. Remember When....

45. Celebrations and Milestones

46. SCAN-xiety 2.0 Unwelcome News

47. Celebrating Fathers

48. Together is my favourite place to be

49. Fireworks- It's not what you think!

50. I'll get by with a little help from my friends!

51. Gone Fishin'

52. Our Photographer

53. A Blessing and a Curse

54. Don't Poke the Bear!

55. Tired!

56. Standing Tall Through it All

57. Green Thumb Distraction

58. Today's Forecast: Foggy with a chance of forgetfulness

59. Back to School Thoughts

60. One Year BLOGiversary!

61. I get knocked down... but I get up again!

62. Birthday Season: A.K.A. Cake Month!

63. Here we go again!

64. Happiness is Medicine too Dad!

65. Waiting!

66. Our Life is like a Roller Coaster!

67. Bottle Buddy is Back!

68. Finding Distractions!

69. What's For Dinner?

70. Holiday Traditions

71. Thursdays!

72. Let the Countdown Begin!

73. For the Birds!

74. New Year, New Hope!

75. Groundhog Day!

76. I Want to Break Free!

77. Back to the Drawing Board

78. Not Playing the Waiting Game!

79. B is for Biopsy

80. Sometimes I forget!

81. Supporting my local Hospital and Cancer Centre

82. Negative/Positive

83. In My Shoes

84. And So it Begins Again....

85. 1st....2nd....3rd....

86. A Room with a View: Looking out my Hospital Window

87. Home Sweet Home

88. Putting on our Shoes

89. When In Sickness and in Health, Really Matters

90. Take a Deep Breath In - Hold It - Breathe Out  

91. PIVOT!  SEIZE TODAY!

92. When one door slams shut.... another door opens!

93. Summer Breeze

94. Rainy Day Blues

95. 33

96. Journey vs. Battle

97. Lean Mean Cancer Fighting Machine!

98. If I am knitting, everything must be ok, right?

99. Pain in the @#$% !

100. 100 Blogs

Again thank you for traveling this journey with us. We appreciate your ongoing support and words of encouragement along the way. We continue to hope for the journey to continue for as long as possible and we thank you for joining us along the way!

Richard & Michelle

Pain in the @#$% !

Well this second clinical trial treatment is certaining hitting me harder than the first or any other previous treatment really. Hopefully that is a sign that things are working and making a difference! I am tired, irritable and can't seem to get comfortable for any length of time. I am napping more than usual and just don't seem to have the same level of energy that I used to have. 

It has crossed my mind, that this may not be the new treatment at all that is causing this discomfort and irritability, but is an evolution and the progression of my symptoms with time. On the other hand, or glass half full perspective -  perhaps my new treatment is working and is fighting my cancer on the inside and this pain is the price to pay on the battlefield. I am hoping that it is the latter of course and all this discomfort will be worth it -- that it is making a difference and is actually shrinking my tumors. 

One of issues I am having this  this time around is back pain (and well something else we don't often talk about, constipation).  Dealing with the first issue - I don't know about you but next to ear aches, I find back pain  most frustrating as you can't really solve the issue. You can subdue it for awhile but it always seems to come back. It is not debilitating pain (at the moment at least) but a constant annoying pain that increases and decreases in intensity throughout the day (or the night for that matter). It is the type of pain that doesn't let you get very comfortable either sitting or lying down. The problem with taking pills to help with the pain, is other complications start to occur.  For example, one of the side effects of the codeine is it can cause - yes I am saying it in a blog - constipation. They sure do!  This is also a potential side effect of my immunotherapy medications. A double whammy. Yippee! Which brings us to my second symptom, a real pain in the @#$%! It seems that to try to solve one problem, you create another one!  Not really a great topic of discussion really but I promised to be honest in my blog and wanted to share some of the negative sides to having cancer, beyond the cancer itself.  I have never been the type of person to take numerous medications for my ailments, but my list of daily pills and supplementary pills is beginning to grow.

I am back to taking some meal replacement drinks to supplement my calorie intake. Despite being stubborn, reluctant and holding off for a long as I could, I had to admit defeat and return to using them to help provide me with my daily nutritional needs. This brings back memories of the beginning of my cancer journey when they were my primary source of nutrition. I hoped to not return there if possible.  

Overall I should not be complaining as I am sure that there are many other cancer patients out there that have it much worse than me in terms of side effects and pain and wish this was all the side effects that they had. I shouldn't complain really, in fact I need to come to the realization that it may get much worse as time goes on. We shall see. For right now while there is pain it seems bearable and manageable and I can live with this level of discomfort. 

100 Blogs!

Next week is a special week for My Personal Cancer Journey blog as we celebrate 100 blog posts. I can't really believe we have reached this milestone and I never expected to still be here writing this weekly blog for this long. An amazing milestone for sure.  Be sure to check out next week special blog post.

In the meantime, as the saying goes:  "no pain, no gain" right? Let's hope so. 

Richard

If I am knitting, everything must be okay, right?

This week's blog comes courtesy of My Michelle.

I’ve grown up in a family of knitters – my sisters knit, my mother knitted, my grandmother knitted, Richard’s mom knitted, my sister in law is a fabulous knitter and I am sure there is a much deeper legacy if we go back in the family tree, of knitters.  Some of my most prized possessions are those little keepsake sweaters and baby blankets that my mom and sisters had knitted for each of our children upon their birth.  I have those tucked away and ready to pass on to our children when the time is right, and they bring little ones into the world.  

I had mentioned before, that my mother had a severe stroke several years ago now.  In her home, there is a small wooden chest that was made from a refurbished piece of furniture from her childhood home, and in it she had stored all of her knitting books, needles and odds and sods. I know there are some little buttons she had picked up to put on a sweater for one of the grandkids in one of the drawers, leftover yarn from projects she finished in another little corner, vintage pamphlets and patterns that she either made or always planned to get to in the bottom drawer, but time got away on her.

Richard’s mom, so proud of her son going to Queen’s University, knit him this amazing tricolour scarf – it must be at least 12 feet long, with this knotted fringe, you can wrap it around your neck several times and have lots of length left.   A lot of love and pride went into it’s making.  Every homecoming weekend we were able to attend, we would dig out that scarf and Richard would put on his Queen’s jacket and we would blend into the crowd of other proud graduate students out to cheer on the Queen’s Golden Gaels football game – belting out our “Oil thigh…..”.  When our daughter was accepted at Queens, Richard passed the scarf on to her and it had a place of honour and on display in residence at Victoria Hall, and later in her student apartment and it will carry on there for another couple years as she does her graduate work at Queens.  Oh, the stories that old scarf could tell!  My sister in law who is a world class knitter, knit me this amazing fair isle sweater from a pattern I had found in an old British magazine.  I wore that sweater for many years on my treks around Queen’s campus, the envy of many I am sure!  I still have that sweater and wear it every fall.  

I have also been known to break out the needles now and again and knit. I don’t seem to remember a time of learning to knit, it was just a natural thing, I think I just kind of learned it from watching my mother knit.  As a university student and when money was tight, I remember making home knit gloves for all of my friends at Queens, with these pretty cables on the wrist – I was pretty proud of how they turned out.  I remember knitting Richard this dark green sweater one year as well, again money was tight, but that sweater was made with love.  We were married for 7 years before we were blessed with our first son, Jonathan and it wasn’t an easy pregnancy.  I remember my younger sister had knit me a little lumbar pillow to help me get comfortable, I still have that little pillow tucked away.  My older sister Dianne knit a beautiful christening shawl for our children, and it is a treasured family heirloom.

But like most things, it’s hard to find time and energy to knit when you are busy with juggling a family with 2 careers, commuting, pursuing graduate school, and raising a family.  Now and again over the years, I’ve made a project or two, but it has really been since Richard was diagnosed that I’ve started to pick up the needles and work on a few things.  Stress knitting you might say.  I’m really into knitting home made socks, and always looking for a challenge, I  have worked out a few original designs, borrowing something from this pattern, and something from that pattern and working out the math (yes I manage to work in the geekiness, being a science girl at heart), to create something new.  I finished a pair and sent it to our daughter at Queens to keep her warm shortly after he was first diagnosed.   I’ve finished 4 pairs while he was on the first round of chemo.  Knitted a sweater on the 2^nd round of chemo.  Started more socks on the 3^rd round of chemo – I was in a bit of a knitting obsession you might say.  Then as the news got worse, the knitting started to drift away.  Richard and the kids keep trying to get me back on track, gave me some more wool for Christmas and a beautiful knitting bowl to hold my yarn, a few books and patterns, and yet it still sits in the bag.  I have a beautiful sweater I started that still sits on the needles.  I seem to have lost the spark, and I don’t know why.  

I think it may have something to do with how knitting is more than just knitting to me.  It’s creating something for someone to give away, for them to enjoy and wear, often attached to life milestones or holidays.  My subconscious  (well now that I am thinking about it) my conscious mind, is kind of blocking me because I don’t want to associate this next project with the troubled times we are treading.  

I think the day will come, when I’ll be able to pick up the needles again, and maybe then the rhythmic motion, stitch counting, and creating will bring me comfort.  I have a whole queue of projects and people waiting for things, not the least is our son Josh and a nice toque (I haven't forgotten Josh),  
Maybe I can make something from my mother’s little dresser and have a part of her with me or give away to my siblings, we miss her so.  Maybe I can get that Queens scarf back from Sophie and give it a place of pride around my neck and celebrate the many happy memories of a family well loved, and my Richard.

Knitting is like a little bit of home to me,

Love Michelle

Lean Mean Cancer Fighting Machine!

Well it is hard to believe that I am already completed my second round in my new cancer trial. Time does fly by. The first round really knocked me down for a few days but so far the second round doesn't seem to have as much punch as the first. I seem to have bounced back quicker this time. I am so thankful because I was out of commission for quite a few days the last time with extreme fatigue and soreness.

This week, I was late arriving for my treatment due to an accident on the 404, which created a huge back up of traffic for what seemed like kilometres. I could feel my stress levels going up as I have never missed or been late for an appointment so far. I was worried that I might have to wait for another opening later in the day and this was a concern as it was already going to be a seven hour day as it was, or even worse, it could have been cancelled and need to be rescheduled.  Luckily it did not delay the start of my treatment and I was able to start up fairly quickly after my arrival. 

As I sat waiting to be paged to my chemo suite, I scanned the room (as I always do) and noticed a man across from me wearing a t-shirt that caught my eye. It had the following statement on it: Lean, Mean Cancer Fighting Machine. This really struck me. What a great statement! What an empowering statement. It was true. Each of us here waiting for our buzzers to go off to let us know we were ready to start our treatment were fighters. (Yes, when I say buzzer, I mean like a little buzzer you get when you are waiting for a table at "The Keg").  We are all mean, lean cancer fighting machines! Well to be honest, I'm not that lean, and I'm really not that mean, but definitely a cancer fighting machine! I knew right then and there that I needed one of those t-shirts!  I quickly searched it up on Amazon, and wouldn't you know it, my t-shirt has been ordered and should ship in a few days. I will wear it with pride.

Once my buzzer went off and I entered the "purple" chemo section of the hospital and settled into my chair, wouldn't you know it but the man with the Lean, Mean, Cancer Fighting Machine t-shirt was seated directly opposite of me. I just had to tell him that I liked his t-shirt. He smiled and stated that a friend had bought it for him after his cancer had come back for a second time. He was starting treatments today to try to beat cancer yet again. What a cancer fighting machine!

I overheard one of the nurses tell him that they treat over 150 people per day in the chemo suites on the fourth floor. There are 18 floors at the Princess Margaret hospital. No matter which floor I visit, it seems to be full of patients and hospital staff. From young to old, from the hardy to the extremely frail, from those that can walk independently to those that have to be transported by wheelchair, all races and diverse backgrounds are represented here. Cancer doesn't discriminate. It still surprises me to this day what an impact cancer has on so many of our lives. I did not see it or take the time to see it before I had cancer, for that I am remorseful.

After seven long hours at the hospital, I began the journey back up the 404 in stop and go traffic to return to my home, sweet, home. My family was anxiously waiting for my arrival (calling me in the car for arrival time status updates). It is amazing how as soon as you pull into your driveway, your stress levels go down and you can finally begin to relax after an intense day. A bit to eat, a cold drink, resting on my patio and filling Michelle in on the day's adventures were next on the agenda.

Going to Princess Margaret now has become a fairly routine event in my life. I go at least a few times every other week. I am getting pretty familiar with the hospital itself, the routines and procedures that will happen during treatment and I even know some of the staff by first name now. I am so thankful for the wonderful care that I am receiving there but deep down I wish that I did not have to go there and this wasn't part of my life. 

"You have been assigned this mountain to show others it can be moved." ~ Author Unknown

I am a lean, mean, cancer fighting machine and I've got my whole team in my corner!

Richard

 

Journey vs. Battle

When I started my cancer blog over a year ago now, I struggled with what terminology I would use to discuss and share my own personal experiences along the way. Was it a cancer journey or a cancer battle? Was I fighting and battling cancer or was I dealing with a disease that would change my life. How would we handle it? How would we navigate what was yet to come?

Before starting my blog I skimmed some other cancer blogs and found that most were referring to their journey as a 'battle' or 'fight' against cancer. They included a lot of war terminology that seemed harsh and inappropriate to me at the time but now that I have been on this journey and have experienced all that cancer brings to my life and my family's life, it really is an accurate metaphor for the journey. I had purposely chosen to use the word 'journey' instead because I preferred to use non violent terms of reference and wanted to remain optimistic and positive throughout the posts but make no mistake this is a battle! This is the fight of my life, so I thought for this blog, I'd try using the battle analogy - maybe it reflects a little how I am feeling today!

Mission Possible?

Right from the start of this journey/battle/fight we were given terrible odds of winning (or surviving really). When you are told that you have three months to a year to live at your first appointment with your oncologist, your heart sinks, you feel hopeless and finding the will to 'fight' on doesn't really enter the picture at that particular moment in time. Surprisingly after the reality and scope of the situation finally does sink in, you quickly realize all that you have worth 'fighting' for, you regroup or pivot, you plan your 'strategies of attack' and your formulate the 'ongoing battle plan' to 'fight' back against this worthy enemy. 

Using Every Tool Available in my Arsenal

From the beginning of my cancer diagnosis, my  team has used every treatment option available to 'battle' my cancer. I have gone through radiation and three different chemotherapy treatments and now two clinical trials. Although my cancer did 'retreat' back a few times during these treatments, it ultimately fought back and moved on to new battlegrounds in my body. As Michelle likes to point out and remind me, we may have lost these battles but they did provide me/us with additional time and I am still here today fighting on, twenty one months later, still able to talk about the fight and still able to battle on. It's not over yet!

Collateral Damage

I have experienced some side effects as a result of my treatment regimens that have included an ongoing compromised immune system, various side effects with various levels of discomfort, pain and intensity.  My body weight continues to fluctuate and has once again begun to decrease due to an ongoing lack of appetite and some difficulty swallowing. Increased pain and soreness in various regions of my  body and some sleepless nights are the new norm for me I guess. 

One piece of collateral damage for cancer patients that doesn't get talked about much is the emotional side of cancer and the toll that cancer takes on the patient, caregivers and family. Your emotional quality of life and that of your family suffers.  You are constantly fighting off negative emotions, moments of despair and melancholy. You are scheduling your life between appointments, treatments and recovery days. Your hopes and dreams for the future are pushed to the here and now. You see others that are moving forward with their lives and planning for the future, exploring fun and exciting retirement options and you just can't help but feel a little jealous and envious of them. We should be doing this too! Your children's lives are also impacted by the 'battle'. Although they try to move forward and continue on as normal as possible, it's not normal and will never be normal again. Cancer is not going away. The worry and concerns are always there. It is hard to focus on your own new exciting life journey when they see the struggles and worries in their parents.  The lingering cloud of what is to come is always just a thought away.

Army of Support

Every 'war' needs a strong army to 'battle'. I can honestly say that I feel that I have a strong army of support with me, every step of the way. I am so thankful for the 'army of support' that we have received along the way. This blog has allowed me to share my journey and in turn learn about the personal 'battles' that many of you are facing or have faced yourself. We have come to realize that you can not fight this 'battle' alone and that it takes a community of supporters to help along the way. We are so grateful to have you by our side and for your words of encouragement, support and prayers. 

Fighting the Good Fight

We will, as a family, continue to 'fight' the good 'fight' for as long and as hard as possible. It has not been easy. This is a battle of wills and I can be very stubborn if I have to be!

Whatever I/we choose to call it, it is the fight of my life. I am just a stubborn as cancer can be. 

"We will never surrender!" ~ Winston Churchill

Thanks for supporting me along the way.  

Richard

33

Well the first week of my new treatment is now over. Time keeps moving forward. I am so glad that this new option is available to me at this time and we were not left waiting. 

How am I doing?:

Thankfully my first treatment on the clinical trial seems pretty uneventful overall. I spent the night at Princess Margaret at the phase 1 clinic on Monday and had tests and appointments for most of the day on Tuesday. It was a long two days for sure and while this treatment has less ongoing blood samples and monitoring and only one overnight stay this time around, the treatment itself does seem to be more intensive and a little harder on me and my system overall. 

Tired:

I am definitely more tired than usual this time around. It could be partly due to the lack of sleep during my stay at the hospital. I can't really sleep well in the hospital. I think I mentioned this before in a previous post, but their pillows suck! I have a firm, memory foam pillow at home and they have flat, thin pillows. Not a match for me that is for sure. I did get to watch hockey game seven between the Leafs and the Habs on my laptop but as we now all know, the outcome was not what I was hoping for. Will we ever make it to round two in the playoffs! 

Are naps my new normal?:

I think I went for at least four naps yesterday. Definitely not my usual self. I am normally lucky if I fit one good nap in. Oh well, I have to give myself a bit of a break as I did just start a new cancer treatment. I can't expect to be peppy and ready to go all the time. Just taking some time to enjoy my time on the backyard deck, listening to the birds and surveying the gardens and spending time with a good cup of coffee and talking to Michelle and the kids, is good enough for today.

3 is my Lucky Number:

Today Michelle and I celebrate 33 years as a married couple, but we have known each other for 35 years. Amazing really not only how fast time has gone by, but also how lucky I have been to find my soul mate.  Who knew that night 35 years ago when I asked her to dance and she said "yes", that we would build such an amazing life together.  I must say, that  based on my prognosis, I did not expect to be here to celebrate this milestone this year, that is for sure. We are so glad that we can celebrate together. We had plans for a beautiful dinner on the deck tonight, but we are just going to push that out to next week, and hopefully I'll feel a little more like myself.  Ice cream, now that still goes down ok.  For our wedding dinner, we had strawberry ice cream parfaits for dessert - we are going to indulge in that tonight - a strawberry shake for me and the sundae for Michelle (and I am sure she will find some way to include chocolate sauce, LOL).  

Three has always been a lucky number for me and this year is a double three for us, so come on numbers, bring me a little luck. 

Here's hoping for as many more years as possible (with many more ice creams and with a strawberry on top!)

Richard

Rainy Day Blues

I woke up this morning to a wet, rainy day.  It has been awhile since we have had any substantial rain so it is welcome for all of our newly planted pots, shrubs and gardens to have a good soaking or at least a day of misting.  Our lawn was just freshly cut yesterday so this rain will help to keep it lush and green.  Looking out the window over my backyard this morning, I noticed the vibrant and varied colours of green throughout the yard. Nature really is so beautiful. The dark skies and the wet conditions really make the palette of greens look breathtaking and the colours pop.  When you get the chance to actually slow down and 'smell the roses' you realize the natural beauty that is all around us. I am so fortunate to be able to be here to see this (except maybe for the snowflakes that soon followed). Yes you heard me right, snowflakes on May 28th! But this is Canada - eh!

I find that rainy days give you an excuse to slow down and take some time for yourself. Let's face it, I can't really complete my outdoor 'to do' list today. I guess I could always find something to do on my indoors 'to do' list but....... I think this will be a good day for an afternoon nap. A good day to take a midday bath and maybe snuggle up and watch a movie. 

The problem with slowing down and taking some time for yourself is that it gives my mind a chance to wonder. Usually I am so hyper focused on daily chores, schedules, and appointments but when I get a chance to slow down, my mind always seems to end up in the same place. I start to think about the future or lack of a future for me and my family. I start to get nostalgic and then get melancholy. It is hard not to wonder about what life events I will miss or not be apart of.  Lately I have been reminiscing more about past memories and even having dreams with people and places from years gone by. It is really interesting how the mind works. These moments or flashbacks of my life are both heartwarming and distressing at the same time.  

I have to keep remembering and telling myself that none of us can predict the future. None of us know what will come next or how long we have. I need to focus my energies on the here and now. I need to enjoy and celebrate the present, as the future is well, in the future, and not promised for any of us really. 

And on that note, in my immediate future, it all begins again on Monday!  Here we go again! Clinical trial number two starts!  It's back to the hospital, lots of blood work, tests and more CT scans. At least this trial is every other week so we will get some reprieve over the summer to rest and enjoy without constant weekly visits to the hospital. We are even trying to squeeze in a few getaways on my weeks off. New hope, new promise and hopefully some positive results await.

I will take advantage of this 'rainy day' to savour the time that I have with my family and be thankful for the blessing that we have together. 

"Somedays you just have to create your own sunshine." ~ Author Unknown

Richard

Summer Breeze

This week's blog post is written by My Michelle.

It’s funny how here in Ontario, we seem to quickly go from winter right into summer - not that I am complaining - as this winter for some reason, seemed just a little too long.  Richard and I love to garden and see the perennials start to shoot up as the days get a little warmer, the sun a little brighter, and we spend more time out of doors.  No matter how full the garden was last year, we always like to head out to the nursery and end up coming home with a trunkful of new plants to go in just that spot, that is missing a little something.  We always try and switch it up every year with a slightly different colour scheme on our patio - this year it’s white and green in the front yard, and tropical in the back with lots of ferns.  We are trying a magnolia bush and jasmine plant in our front planter - smells divine - we’ll see how it all goes.

May is kind of a bittersweet month for us.  It was in May that we lost my father to a battle with lung cancer. It was in May that Richard’s mom unexpectedly passed away - both were gone too soon.  It was also in the month of May that my mom had her stroke. This month we also lost a colleague from our tennis club that has been very upsetting for us both - we often saw her on our walks around Newmarket and stopped to chat with her, in this case we spoke with her just the day before she experienced a brain aneurysm and passed away shortly thereafter.  It was ironic at that time, that she was asking Richard how he was doing and wishing us both the best, not knowing what was to come her way, the very next day. Life can be so unexpected and yes, unfair and frankly we are starting to think we should hop from April right into June and skip that month, which hasn’t been the best in recent years.  

This month (May) Richard was discontinued from a clinical trial due to progression of his disease and as he shared last week, we are going through the workup for another one.  We just keep hoping that something will work, give us more time together, and importantly that Richard will continue to feel good.  It is tiring for him and we just can’t seem to catch a break. 

All that being said - Richard and I are more the “glass half full” kind of people.  We look for, and try to find the optimism in most things.  We are not letting cancer hold us back - we’ve planned a cottage vacation, we are planning a getaway for our anniversary (lock down permitting of course), we are planning for some small reno projects at the house and continuing with our basement clean up!

But when that summer breeze beckons, and the pool is sparkling, the deck cushions and loungers are out and the perfume from the flower garden hangs heavy in the air - outside we go, coffee in hand and breathe in the day.  I’m not particularly religious or spiritual, but isn’t it kind of comforting to think that just maybe that light summer breeze that lifts your hair and rustles the leaves in the trees, is like a soft memory passing by.

“Summer breeze, makes me feel fine….”

Let’s turn May around into more positive memories and celebration of life.

Love Michelle

XO

When one door slams shut.... another door opens!

Well that didn't take long! In less than a week I have been fortunate enough to be offered another phase 1 cancer drug trial at Princess Margaret. We are shocked and amazed really. When I went down for my scheduled appointment earlier in the week, I was not expecting to hear any positive news. I had been preparing myself for my oncologist to say that they didn't have another trial to offer at this time and that they would keep a lookout for any upcoming trials and we would be on our own until then. I thought she would offer pain medication and discuss what palliative supports were available. I am not ready for these types of discussions as I look and feel quite healthy, at least on the outside anyway. I arrived at my appointment just in time and was having a bit of deja vu as this appointment was in the same waiting room that I had been in two months previously to discuss my first trial. Here we go again! I didn't have to wait long for my oncologist to enter the room and share some exciting news.  She arrived promptly in the room and after getting Michelle on the phone for the consultation, and with very little small talk, she immediately told us that there was another clinical trial option. We were stunned and shocked really. This is not what we had expected. All week long my hopes had been dwindling and here, the door was opening up again (maybe).  

Of course this will mean that I'll be entering into a few weeks of tests and procedures and likely another biopsy - but I will gladly get poked and prodded and take this on again, with the hope of a better outcome this time around. We are currently in the process of reading over the trial information and will be coming to an informed decision as to whether or not it is a good fit for me. I have found that when your options narrow considerably, your risk tolerance goes up considerably. It will take four weeks for me to flush out from the previous trial, but I am  two weeks into that already so I should be ready to go for the end of the month. This will bring forth another set of tests and round of procedures to go through to qualify and meet the requirements of the study. I am willing to go through all the hoops required in the hope that this new trial will make a difference. 

When one door slams shut, often another door opens. I have found over my lifetime that this statement holds true. Hope is something to hold onto, despite the evidence that might suggest otherwise. Last week my hopes were dwindling and I couldn't help but feel defeated. A week later there is new hope. Just having an option, gives me hope!  This helps to reinforce that there is always hope around the corner. A new day, a new beginning. Don't get me wrong, I do understand that this new trial could eventually end up having a similar result like my last trial, having no new real impact or lasting benefit for me, however we will continue to be hopeful that it will offer some benefit, even a small benefit. At the very least it is offering us new hope and is keeping us going. We shall see how this one goes.  

A new day, a new blessing, a new hope. ~ Author Unknown

Richard 

This week is National Nurses Week! I would like to give a special shout out to all the nurses out there who work tirelessly for their patients with skill, care and compassion. Thank you! I have nothing but admiration for the work you do. By the way, I love nurses so much that I married one!  Love you Michelle.

Run for Southlake- thanks to all that supported us in this four week virtual challenge. We surpassed our goal of $2000. and ended up with $3000. in donations. We are so thankful! We also achieved our goal of 40 km over the four weeks. Thanks everyone.

PIVOT! SEIZE TODAY!

My drive down the Don Valley Parkway to Princess Margaret this week was extra distracting and emotionally charged. This particular drive down was not for treatment, tests or blood work but rather to discuss the recent results of my latest CT scan. My mind was racing the entire way down. As I drove closer towards the hospital, various scenarios were playing around in my head.  I was mentally preparing myself for all possible outcomes for my scan results. I was thankful for the radio that at least offered a few moments of distraction from my racing thought process. The heavy traffic flow also helped to distract me from my emotions as I needed to focus on the stop and go traffic at times. I was also thinking about and thankful for the messages of support and the "I'm thinking of you" texts that greeted me when I woke up that morning and throughout the day. I am so fortunate really.  My mind kept returning to the line of thinking that surely this time the news would be different. 

WAITING ROOMS 

Adding to the anxiety and stress was the time spent waiting in the waiting room. I don't know about you but waiting in a waiting room just adds to my overall nervousness, especially when you are waiting to get some important news. I wasn't even able to drink the dark roast coffee that I had just purchased for the wait. As I looked around the waiting room I couldn't help but notice all of the faces of the other patients. I couldn't help but wonder if they too were waiting to hear important, possibly life changing news, like me. Thankfully the t.v. screen offered a few more moments of distraction for me but the non-stop news channels' coverage on vaccines, issues in Long Term Care, long lineups at pop up clinics, international cases of COVID 19, were not exactly soothing or relaxing, I must say we all could use a little good news these days!

Soon I was escorted to the second waiting room. You know the  one, that inner waiting room when you are left alone behind closed doors in a small examining room waiting for the doctor. I don't know about you, but that inner waiting room is very intimidating. You can hear people talking and moving about and you don't know what is happening or when the door will open and the doctor will just pop in at any moment. You can't help but scan the room because let's face it, there is nothing else to do. Often there are posters warning you of signs and symptoms.  Again, not exactly easing my mind!

ALL FOR NOTHING!

To get to the point, my CT scan results again were not favourable. My oncologist walked in, we put Michelle on speaker phone, and she immediately put some photocopies of scan results on the desk. It quickly became clear from the images and her explanation that my cancer tumours continued to grow (at a fairly rapid rate I might add) and that it was her conclusion that this new trial was not working. She then indicated that my participation in the trial would need to be stopped. Devastating news for sure. All of those tests, procedures and time that I had spent in the hospital overnight did not pay off in the end. My cancer continues to advance and precious time continues to tick on. I must say that it was worth the shot. It could have made a difference. Still very disappointing news for me, Michelle and the family, that is for sure.

PIVOT!

We are now back in limbo again, waiting for another possible trial to open and be a fit for me and my type of cancer. The options are narrowing considerably now.  I have a scheduled meeting next week to see what options, if any, are available to me. I gave myself two days to have a pity party and am now I am back to focusing on the positives. I am still feeling good, I am still able to fully function, I have my family and friends supporting me. Hopefully things will open up soon and we can enjoy life as we knew it, once again.

My journey has taken many twists and turns. There seems to be more downs than ups lately but we will fight on. I am not a typical patient and I have been an outlier in so many way thus far.  So as always, we have hope.

Thanks for your your continued words of encouragement and support. I truly appreciate it. Your kindness is not forgotten.

Carpe Diem! Or as we now like to say, Seize Today!  

Richard

Take a Deep Breath In - Hold It - Breathe Out

SCAN-xiety 3.0

Well here we go again! It is time for another CT scan to determine if my latest line of treatment is making a difference or not. You may recall in my previous blog posts SCAN-xiety & SCAN-xiety 2.0, my track record for receiving positive results has not been good. This brings forth additional anxiety each time leading up to the  test and waiting for the results. As the date of my CT scan draws closer our worry and fear increase proportionally. Many questions continue to swirl around in my head including:  will this time be different? will I finally get some positive news? has my new treatment made any difference at all? have all these tests, overnight stays at the hospital been worth the effort? 

I really did not expect mental health to be such a key factor in my cancer journey when this all started, but after you are diagnosed with cancer, your emotions run wild and are easily intensified. As Michelle mentioned in her blog post Our Life is a Rollercoaster, we have gone through every emotion imaginable from anger, frustration, fear, sadness, surprise, despair and hopefulness to just to name a few. The twists and turns of a cancer journey make life a living drama. It is not a ride we asked to be on but we are buckled in for the long haul and are ready to face all ups and downs and twists and turns that cancer brings our way. 

The stakes of these particular CT scan results are really high this time around because they will indicate whether or not  my treatment is making a difference. It will also indicate continuation or perhaps topping of my trial.  The CT scan review meeting with my oncologist is already set for early next week so at least I will not have a long wait to know. This is a small comfort because the emotions and worry set in during this waiting period for all.

Our hope is that this treatment is actually making a difference and that I am slowing down the spread and growth of my active tumours. This was the hopeful outcome of joining this trial in the first place and this is the message we hope to receive next week at the post CT scan meeting. I think that we deserve it. After several disappointing CT scan outcomes we are due for a positive one this time around. I have been following every protocol and attending every procedure, appointment and treatment without fail. We must reap the rewards of this commitment at some point, right?

Regardless of the outcome of the meeting next week, we will not give up! Giving up means admitting defeat and that is something I/we just can't do. I will do whatever it takes to keep moving forward, to keep as healthy as possible and to live my life with my family and friends. If this trial, is not working we will look for another one. There is always hope, there is always a possibility and least that is the the way we see it. 

Like the instructions during the CT Scan..... we need to take a deep breath in, hold it, hold it, hold it and then breathe out, while we wait.

" When you have exhausted all possibilities remember this, you haven't." ~ Thomas Edison

Richard

When In Sickness and in Health, Really Matters

In sickness and in health really does say it all! Michelle has fulfilled this marriage vow every step of the way along this life journey we are on. She is the one person who and has been there with me from day one. When we were challenged and moving from good health and life plans, to facing symptoms, all the scans and tests, the big "c" diagnosis,  the radiation, cycles of chemo,  up to my current clinical trial participation, she has been there for me in every possible way. As I wrote in My Michelle, she is the most important person in my life.  

Luckily my current level of care can best be described as minimal in terms of the physical needs as I am fully able to function and support myself in most areas. At least for now anyways! But a burden of care is not just care of sickness and nursing and medicine, it's all the other stuff, the living, the worrying, the supporting of me and our children, and the coping too. Michelle, has been there to provide my with much needed emotional support. This is an area that medicine & treatments can't address. She checks in on me throughout the day to see how I am doing and always tries to lift my spirits. One positive of the COVID pandemic is that she has been able to work from home 100%, so we are always home together.  I know how difficult it must be to remain positive herself, to have high spirits all the time and keep our family going in the right direction. It is a constant worry for her. I know that she often feels helpless and perhaps feels that there is really nothing she can do, but she is doing more than she knows. It means the world to me to have her by my side and to know that she is there for our children. She tries her best to ensure that I am comfortable by providing me with anything that I may need or want (she bakes great pies, LOL!). She is simple amazing! I am not sure how she keeps it all going really.

She is my champion, my advocate and my number one cheerleader. I know that this is not an easy thing to do when your own emotional state must be verging on despair at times.  I know that she is secretly researching and reviewing other trials and treatments in hopes of finding a new path forward that may lead to some more positive results.  Michelle does this work unselfishly (while maybe selfishly hoping for more time). She does it with love, care and compassion. I recognize the toll that this is all taking on her. 

Who cares for the caregivers?

Being a caregiver to a cancer patient is not a 9-5 job. It is 24/7, day and night job. There is no rest or respite for caregivers. This is a role that they did not ask for or ever wanted,  but regardless they take on this almost invisible role with determination and with a sense of purpose. Michelle does this each day with care and compassion.  I try not to be a burden for her and hope that she realizes how much she means to me. Michelle thank goodness I have you in my life.  

It hits me, this is when in sickness and health, really tests you, and really matters.

All my love to you Michelle X0X0

Richard

Health Update: I have now graduated from the 18th floor- Clinical trials space to the Chemo "Daycare" for treatment on the 4th floor at the hospital. Who would have thought that I would be in daycare at my age! LOL. I actually wish that I did not have to move floors! The 18th floor, although busy was nothing like my experience on the 4th floor this week. As always, I continue to be shocked by how many people are dealing with cancer and cancer treatments.  There are so many people and treatments underway, that  you have to take a number and then wait in a large, busy, socially distanced waiting room to be called to let you know which location to go to when it is your turn for treatment. I had to wait 2 hours past my appointment start time before a chair became available. I have been told that there are over one hundred chemo chairs on the floor and they are divided into stations or centres by colour. I was in the purple suite this week. Your actual chemo chair space is not much bigger than a small closet. You can forget about privacy. You are in close proximity to others that is for sure. Thank goodness for my headphones and laptop to keep me distracted and entertained, and what did we do before cell phones and texting to keep in touch.  But truly, I am  thankful that there is a chair and a space for me!

Putting on our shoes!

This week's blog come courtesy of My Michelle.

I love shoes of all kinds, it’s no secret and I don’t know why, I just do!  There’s just something about them that brings me joy – whether they are dress shoes with heels, a beautiful colour (blue is my favourite, but red shoes are special too!) and my more functional ones for walking and running.  There is a standing joke in my family, as one time, I did buy a few (yes I said a few) on a bit of a shopping spree at Jimmy Choo, and I continue to have the store reach out to me with my “personal shopper Andrew” trying to lure me back! Yes, I may have a bit of a shoe addiction problem!  But I do come by this honestly!  My mom is a big shoe lover.   At this time she is in long term care and not quite the same since her stroke of 2 years ago, but it brings a big smile to my face as I think of her and how just before this all happened and how we did a bit of a shoe “fashion show” trying on all her favourites!  She too is a lover of red shoes!  Lucky for me, Richard has never been too bothered by this hobby of mine as a “shoe collector”, although he was a bit concerned about the “Choo” shopping spree at the time! Lol.

This week kicked off the Southlake Virtual Challenge and fundraising efforts – Richard and I are entered as a team called Richard’s Roadrunners (Beep! Beep!) – not that we are doing a lot of running these days (other than back and forth to Toronto and Prince Margaret Hospital) but we are doing our best to get out and get walking, enhancing our fitness and wellness goals  for this amazing cause.  You just don’t realize how fortunate we are to have this amazing hospital here in our community and the top notch health care teams that they employ, until you need it.  Southlake and the Regional Cancer Centre have been there for us and Richard has received excellent care and follow up – and we are doing our small part to show our appreciation and raise funds.  We are actually in the top 10 for fundraisers for this cause and we thank  you for your support!

Certainly we have been much more active in the past than we are now, we have just settled into a new normal, and lowered our expectations a bit – adjusting to accommodate Richard’s energy levels and I’ve been adding a bit more in to ensure we hit our goals!  While I say adjusting to meet Richard’s energy levels, I have to say he is doing well and not much keeps him down and he continues to outpace me for sure on our walks!  Movement gives you so many benefits, not the least of which is a change in landscape:  something else to look at, other people to see, a chance to see neighbours and say hello (from a safe physical distance of course) and there is something about walking, that also gives you time to talk.   Sophie and our puppy Lily are consistent walking partners, and at times our sons Josh and Jon will join in.

It sometimes takes real motivation, teamwork and support to “put the shoes on” and get out the door, and in many ways, this is a metaphor for how we face these days and this part of our cancer journey together.  There are days when Richard leans on me and with encouragement, to  “put the shoes on”, and outside we go.  There are days (and these are many) when I lean on him and get motivation from him as he “puts the shoes on” and heads down to Princess Margaret Hospital, to participate in a clinical trial, and with the hope that this is working for him and for us.  

When he is away for his treatment, whether that is for the full day or with the overnight hospital stay, our house is a lot quieter,  our puppy mopes around, our kids mope around and we wait for the texts to come through from him to let us know  how Richard is doing, how the treatment is going, how he is feeling and importantly “when are you going to be home?”.  On these days, it is really hard to “put the shoes on” and go about my day.  Sophie and I try and get out for a walk to keep our team going and contributing to the virtual challenge, but we don’t really go out until we know that “daddy is doing well” and we can have a bit of a spring in our step.

We all have our challenges that we are working through every day and I hope that you find motivation to “put your shoes on” and just put one foot in front of the other.  I find that is sometimes all it takes, and before you know it,  you are walking and coping and able to face what life throws at you that day.  That’s all it takes, just face what this moment brings – that’s what I am trying to do.

I encourage you to “put your shoes on”, and if you need a little motivation, there’s nothing like a new and colourful pair to literally put some spring in your step!  I have a beautiful pink pair of trainers that make me smile.

Now I wonder what the new line up is this spring at Jimmy Choo….?

Love Michelle XO